Transcription
No drug rehab protocol is good for coming off of a 20-year benzo-diazepine prescription. I was going in and out of a severe acute withdrawal three times a day. I couldn't speak properly. I couldn't form sentences properly.
The only piece I found that, not this is not piece, but it was less aggressive symptomology was to pace, to walk. So that's that's what I did. I said, I'm not going to these meetings. I'm not doing, I can't. You know, the more I listened, the louder the ringing in my ears got. The more the pain in my neck would ratchet up.
What did they do when they saw that you weren't getting any better? They often thought I was faking. Okay, they did, which was mind-bending.
I am Dr. Yusef with Daring, and it's my pleasure to be joined by Peter Yos today. We're going to be talking about a benzodiazepine injury from Valium. Peter was successful in his career, doing very well, and was essentially disabled, described himself becoming almost like a 96-year-old invalid. You know, at some point, at one point, as well, there was also a suicide attempt in there due to the severe and disabling pain from this. Peter has kindly agreed to come on and share his story because he wants people to know about the risks of Valium and benzodiazepines. So, Peter, thank you so much for agreeing to come on and speak.
Oh, you're welcome. Thank you.
Yeah, and so these are long stories, and I always like to ask about people's initial hopes, right, at the start when they took their medication. So, so, so take us back to when you started Valium. What were your initial hopes when you started this medication?
So, so out of college, I found myself becoming anxious at my first job, and I really didn't know what it was. It was just this weird buzzing kind of feeling in my head, and I would get paralysis when I was trying to answer questions that I knew the answers to previously. I would just kind of go blank, and I couldn't think properly. So, my mother had been seeing a psychiatrist, and she recommended that I go see that same psychiatrist, which I did. And he was prescribing her Valium at the time, alongside, I guess, an antidepressant. And so that particular psychiatrist basically did the same thing for me. He wanted me to try Zoloft and supplement it with Valium. And out of the gate, I was prescribed 10 milligrams four times a day as needed. And that's what the bottle said. So, take 10 milligrams a day, four times, or I'm sorry, take 10 milligrams up to four times a day. And the count was 120 pills on each refill. So, that's what I did. I was taking probably 20 milligrams in the beginning. The Zoloft made me feel terrible. I tried a couple of different SSRIs, they never really worked. So, the Valium actually worked. It worked really well. I had a very good career that was really, there was a lot of public speaking involved in my career, which is usually a driver of anxiety. And it was no longer an issue for me. So, the Valium was working well. I was, things were generally good, anxiety was gone, and I was very productive.
When did you first start to notice side effects from the medication?
About, about 11 years in, around 2010, I started feeling extreme tension and pain in my neck and cervical spinal area. It became chronic, and it still remains to this day, up in this area here. I now know this is part of tolerance withdrawal. It was severe and persistent enough so that I sought help from an orthopedic doctor for facet injections and other treatments to remedy, but nothing helped. This was, this was a series of trips to the ortho for even Botox injections, and nothing helped. So, now knowing that tolerance withdrawal typically presents in a paradoxical way to how the medicine makes you feel. So, if the medicine's making you calm and loose, the paradoxical would be ramped up and tension bound. So, my neck tension in 2010, about 11 years in, was the first sign of tolerance withdrawal, but I did not know that it was coming from the Valium.
It's a good point. You know, I think a lot of people sometimes overlook that benzodiazepines are commonly used for spasticity for patients with cerebral palsy, just because they do have such a prominent effect in kind of relaxing muscles. And so, you know, the tight neck that you were having makes a lot of sense as a tolerance withdrawal symptom.
Yeah. Aside from that, did you notice anything else? Because I know, you know, along with the muscle problems, there sometimes people have can have anxiety problems or sensitivities and things like that. Did, did any of those other kind of tolerance withdrawal type symptoms start creeping around that time, or was it mainly the muscle tightness?
So, the first symptom was the neck tension, and that was, like I said, about 11 years in. About four years later, I started getting severe reactions to leafy green vegetables. So, I'm a guy that could eat anything at one point, and then suddenly, after eating large amounts of leafy green vegetables, like, you know, example would be a salad that had like a spring mix, if there was spinach in it, about 20 minutes later, I would get this nasty, nasty agitation and anxiety and kind of electricity-type tension and feeling in my, again, it's always presenting in my cervical spine. So, it was, it was bad. It was extreme sensitivity, marked by a lot of wakefulness and just inability to kind of sit still when these reactions occurred. So, that was my second piece of information that pointed me in the direction of maybe this was something that Valium was causing. But still, was not certain.
Okay. And, and, sorry, I'm sorry to, often when those reactions occurred, I would redose the Valium to make it go away, not knowing that this was the cause.
And when did you realize for the first time that maybe these seemingly unrelated things were due to the Valium you had been put on?
Well, between 2015 and 2019, so like between 15 years and 19 years in, I was really starting to understand that I think Valium might have something to do with all this, but I'm not certain. So, I went on this wild goose chase of looking for doctors to help me, which I hear that all the time now, you know, now that in hindsight and reading stories of other people who have been injured, I hear this all the time. You go on this crazy search to figure out what's wrong with you, and every single doctor, to a T, is saying there is nothing wrong with you. All your tests are fine, etc., etc. I had Lyme disease testing. I had heavy metal testing. I had just about everything done. I spent thousands of dollars. I bought supplement after supplement after supplement, trying each of them and quickly discarding them because they caused more problems.
And you mentioned that you had a Lyme disease diagnosis. I hear this really frequently from a lot of my patients because they just feel bad. I mean, they feel fatigued, they feel like their mood is unstable, and they feel really run down. Was, I mean, were you experiencing those things as well? Was that how you kind of got, you ended up in the Lyme disease rabbit hole?
Well, I didn't get diagnosed with Lyme. I got tested for Lyme. And so, because I was experiencing, you know, between 2015 and 2020, I was having massive food intolerances, chronic neck pain, and now the brain fog was seeping in. So, I couldn't really think. I couldn't think properly. And then at that point, my psychiatrist was sending me Adderall to help me think. So, now I've got an accelerator and a gas pedal and a brake moving at the same time, just so I could keep working. It was, it was terrible. It was terrible.
So, when, when did you realize that it was a Valium problem? Because it seems like there are a lot of clues along the way. You know, the food intolerance symptoms seemingly clearing up with the dosing of the Valium would make you think like that. And then, I guess you rule out all other potential medical causes because it seems like you're seeking consultation with a lot of doctors. When did the shoe drop, and you said, you know what, I think this is really a Valium problem, and they've missed it?
I was seeing a functional medicine doctor who was part of this team of doctors I was seeing, and she helped me figure out what the food intolerances were coming from. And we finally figured it out. We pinned it on histamine. So, histamine. And when I say histamine, you know, most people associate histamine with itching. And this is not itchy. This is, my histamine reactions were an excitatory response to excess histamine in the gut. And after researching and researching and researching, I finally found that on several different sites that benzodiazepines, and Valium more specifically, interrupts the function of diamine oxidase in the gut. And diamine oxidase is, if you don't know, is the enzyme that sponges up histamine. So, if that's being blocked, you run excess histamine in your body, and then it hits the H3 receptor in the brain, causing that excitatory response. So, I was in this perpetual cycle of, if I eat something, it spiked anxiety and agitation and wakefulness. I would take another benzo, Valium, and it would make it go away, but it was further damaging my gut and aggravating the histamine situation even more.
Yeah. And so, I'm going to come back to this again. Was, did you, was there something that really cemented that this was a benzodiazepine problem for you? I mean, sometimes people find benzo buddies or the Ashton Manual, or there's this "aha" moment where they go, you know what, this is what's going on. I don't know if you, did you have a moment like that?
Yeah. Yeah, when I realized, you know, after that research that I did, it showed me that, oh, that was it. Okay. The, you know, it was absolute. It says, you know, this class of medications blocks DAO, diamine oxidase, and when you do that, histamine spikes. So, I know. I mean, and I was a guy that could eat everything from any food group at any time. And you don't just develop histamine sensitivity. And genetically, it's something that caused it. So, none of my blood, all of my blood work was normal. I was doing, I did a 24-hour urine sample that ran the gauntlet of testing, which I don't even remember what that was. I did multiple blood draws. I did, I was doing infrared sauna for an hour a day to sweat out the toxins. I was going to the gym for two hours a day. I was doing everything I could, and I just wasn't getting better. I was getting worse.
At this point where you figured out it's the Valium, and I guess you're having the food intolerances that are pretty bad, the neck stiffness, and the brain fog has seeped in. What impact had, I mean, what impact had those things started having on your life at that point?
The impact was mind-blowing. It was life-changing. I, you know, I couldn't work effectively. I was, I was working, I was showing up to meetings, but I wasn't effective. I started to worry about driving, my ability to drive, my cognitive ability to react was impaired. I was, I was worried that I could get a DWI for or hurt somebody without even drinking. And it, it was bad. It took a big toll on my, it took a huge toll on my professional life. And thank God, in August of 2019, we had a layoff, a large layoff in our firm, which I was a part of. And it was a huge, huge blessing in disguise. I mean, I was about this close to filing for short-term or long-term disability. And they announced the layoff. So, I had time and resources to go full-time on figuring this out. And that's all I did. I have, I still to this day, have stacks of files of blood draws and labs and all kinds of results to tests that were just inconclusive or just normal. And in this pursuit to find out what the heck was wrong with me.
But what, what the functional medicine doc did was said, you know, we determined that histamine was the cause. She didn't determine that Valium was the cause. She determined histamine was causing the problems. But so what she did was put me on a gut protocol, a gut cleansing protocol. And you probably know by now that a lot of supplements are, you know, quote unquote toxic to people that are in tolerance withdrawal or in acute benzo withdrawal or protracted benzo withdrawal. So, I was taking supplements that were causing those same exact symptoms: agitation, anxiety, pain, tinnitus, electrical sensation. So, I was just not having any success treating my gut. And then in January of 2020, I had my last, I made a fatal mistake, which was, I took a gut, forget what it was called, it was an oil made by Thorne that was supposed to help with histamine issues. And it did the opposite. I went full 180. And after that, I couldn't eat anything. I couldn't, not just, I was on a low histamine diet, but now I couldn't eat any amount of histamine. Histamine is in every single food we eat, but some histamines, or some foods have a larger level than others. I could not tolerate any histamine. In January after that supplement, I was only eating chicken and white rice with eggs. That's the only thing I could eat.
Wow. Another thing is, you know, you talked about a lot of the impact this was having on your work and how getting laid off was a blessing in disguise. What impact was, were these side effects having on your personal relationships?
My wife is very understanding, and so she understood. My two children are not living with me, so that part was good. They didn't have to see this. But all of our social life disappeared. Any bit of social life that I had disappeared. I was a full-time working on my health. My wife was alongside for the ride and watching, and she was there for me to help all the time, and I needed her. Yeah, I needed her.
I know the story takes a turn for the worst because you briefed me on it earlier on. Walk me forward from there. What happened after you realized, you know, this is a Valium problem? I imagine the next step you said was, I need to come off. What happened?
So, so by February of 2020, I was sort of doing an experiment on myself. So, now I was, when I ate high histamine foods, it would cause this histamine burst and that excitatory reaction that was extremely uncomfortable. And I, by that time, I did know that benzos caused that. So, I did not know whether it was Valium specific or not. So, what I asked my physician to do was to switch me from Valium to Klonopin. And I tried that, and I did not have any success with that. So, then I said, let's try Ativan. We tried that, and, you know, same thing. I was just kind of just going like this and just grasping at straws, knowing that this was inevitable. I was going to have to come off this medicine. It was absolutely inevitable. However, I was not able to titrate properly because of these. Now, when I took the medicine itself, without any food in my stomach, so I eliminated the idea or the possibility that it could be a histamine burst from foods. But when I took the pill itself with no food on an empty stomach, I would get this burst. So, I didn't know whether that was histamine or a paradoxical reaction. I still don't know. So, as that was occurring, and I was going from Valium to Klonopin to Ativan, and I was just going, I do not know what I can do. I don't know how I can come off this when every time I take it, I go through the roof for about an hour before I settle down a little bit, just to go through the roof the next time I take it again. So, things were, I was approaching full-blown benzo withdrawal in February of 2020. And I didn't know what to do.
So, what we did, my wife and I, which was the second fatal mistake, was we called around and entered a rehabilitation facility, a drug rehab. And what was important to me was that it was medically supervised, there was a doctor on hand. So, I thought things would go okay as long as there was a doctor on hand. And I was rapid detoxed in five days.
When did you realize that that was a fatal mistake?
About a day into it. A day into it. I mean, I've never experienced pain or psychological or physical trauma of that nature, and I hope nobody ever has to do that ever, ever, ever, ever again. I mean, this is a level of discomfort. I describe it as being stuck or attached to a cattle prod without being able to remove myself, or having your fingers stuck in an outlet without being able to remove your fingers. That's the electrical component. I felt like I was lit a flame from head to toe. That was a very, very intense fire and burning sensation from the bottom of my feet to the top of my head. I did not sleep for that entire week. I paced, I paced, I paced. I walked in circles until my knee, my right knee, the tendons were wearing because I got a lot of pain and irritation in my right knee because the way this rehabilitation center was laid out, it was kind of like a figure eight, and I just kept walking through the hallways. I was on the floor a lot. I was writhing in pain a lot. I was moaning as a 45, 46-year-old man. And I was being told, "Hey, we know benzos are hard, but you'll get through it."
Talk to me about your transition out of there. Did you, did you stay the whole time, or was it, I don't know, was it just a quick detox, or did you leave? Did you just say, did you come to the realization that you weren't going to get the help that you needed there? What, what was the exit like from that facility?
So, that one, I realized they were doing the wrong thing very quickly, like I said, like one day in. And so, I transferred to a different one that had a better protocol. But, you know, no drug rehab protocol is good for coming off of a 20-year benzodiazepine prescription. And so, I did transfer to this new facility. They reloaded me on, and what they put me on was oxazepam, which is a very short half-life benzo. But it was the only one that I was somewhat, you know, it was sort of calming me. It wasn't causing those, I would keep calling them histamine bursts or paradoxical reactions. It wasn't doing that. So, I was going in and out of a severe acute withdrawal three times a day because that medicine would last for, you know, two, three, four hours, and then boom, right back into terrible, terrible acute withdrawal. And that went on for a good month and a half. I was in this rehab during the height of COVID. I watched people come in and get escorted out a couple of times. We didn't know why. We didn't know what was going on in the world. They don't like to show you news in rehabilitation centers. They don't like to have the TVs on. So, I thought the world, I mean, I thought the world was coming to an end, just based on my symptoms and the problems I was having. And then we added that COVID situation onto it, and it was, it was the worst nightmare. It was terrible. I couldn't speak properly. I couldn't form sentences properly. I was having to count the medicine, recount the medicines that they would distribute to you because they often got it wrong. They often had the wrong pill and the wrong cup for the wrong guy and the wrong dosage. And I was just not in any kind of shape to do that. I was, and these rehabs are often, you know, faith-based or 12-step programs, and I could not do any of that. I couldn't. The only piece I found that, not this is not piece, but it was less aggressive symptomology was to pace, to walk. So, that's what I did. I said, I'm not going to these meetings. I'm not doing, I can't. You know, the more I listened, the louder the ringing in my ears got. The more the pain in my neck would ratchet up. And I describe it as, if you have a tea kettle on a stove, you hear it slightly starting to go, and then it starts whistling greater, greater, greater, greater. And then, you know, those are the ears. You know, the ears are just, and then boom, to this, it's not tinnitus, this is shrill metal on metal, horrid, horrid, horrid audible noise that you can't get away from. There is no peace. There was no peace for me. And that part of my injury has been one of the toughest to deal with, is the extreme levels of tinnitus. So, and I was there for about a month and a half. I, you know, I wretched and gagged every single night. They added Lunesta to my nighttime protocol because I hadn't slept. I hadn't slept for weeks. I mean, they say that's not possible. It's possible. I was walking around unslept, like a zombie for weeks and weeks and weeks. And at that point, they gave me Lunesta, and that was kind of like a bullet that put me out of my misery each night for a few hours. And I would wake up, I would wake up about 3:00 AM every single night, every morning, I should say, and on the dot, 3:00 AM, when the Lunesta wore off enough that my withdrawal would punch through. And then from 3:00 AM to about 8:30, I was on the floor in the fetal position, writhing and moaning, until first medication, which was 8:30 AM, where I would get, you know, 15 milligrams of Serax. And that was a cycle that I was in for a month and a half. There, I was stuck there for a month and a half.
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And what did they do when they saw that you weren't getting any better? They often thought I was faking. Okay, they did, which was mind-bending. I mean, I had, I guess their PAs or nurses come in and grab me from my bed and say, "Walk, walk, walk." And then they would take you to the blood pressure station and check the blood pressure and check the temperature and say, "Okay, you're fine. Your vitals are good." Well, I know they're good. I know the vitals are good. It's the brain that's damaged. And this is not the environment to be with a severely damaged brain.
And who gave up? Who gave up first? Because sometimes these places, they push people out when they don't get better, or sometimes the patient realizes, you know what, I'm not going to get better here. What, what happened?
Well, it's funny, yeah, it's funny you mention that because these places, they churn people. You go from one rehab, and they send you to another one to be sent to another one. I mean, they talk to each other. So, as soon as the insurance runs out at one, they try to send you to another. And I think they probably have some sort of reciprocal agreement in place. But I think at the time of my discharge, they were so taken aback from my condition that they were ready to say, "Sayonara." And I had to go. I was at the point where I think being here is causing, is preventing me from any kind of healing. So, maybe if I'm back at home, I would do better.
What did your wife do when you returned in that state?
Oh, jeez. My whole family thought I would be better when I, you know, came home. Like, you're going to rehab, and you're going to be detoxed, and you're going to come back healed, better, you know? And I can remember having a conversation with my brother and my sister-in-law, and they said, "You sound terrible. I could hardly talk on the phone." And they said, "You sound terrible. I thought they took care of this for you." And I'm like, "No, this is, this is a long duration thing. This is going to be for a couple of years." And so, that was the start of my at-home detoxification journey.
And when did you realize, I guess, what you said there, that this wasn't, you know, that this wasn't withdrawal, this was a, you know, essentially a brain injury and that you'd sustained some brain damage and that you were really in it for the long haul for recovery? When did that dawn on you?
I knew it. I mean, I knew it all along. I was just holding hopes. I read a lot about this before going in. I knew I was in for an ass-kicking, especially because I couldn't taper properly. So, I knew I was in trouble. So, I was just trying to figure out how to create a softer landing. And what I came up with was, well, you know, at home, I continued the oxazepam three times a day for about two, three weeks. And that in and out of withdrawal three times a day was, it was barbaric. The rebound anxiety was so painful that I decided that, you know what, I need to just stop this altogether. I need to get off it. And then, yeah, it's, I'm going to be in acute withdrawal, but my thought was that it would smooth it out instead of so much of this. And so, that's what I did. I ended up, and by May 8th, I took my very last benzo. May 8th, 2020.
And what happened? Did things smooth out, or did things, or I don't know, maybe things took a turn?
Well, it did. The roller coaster of in and out of withdrawal three times a day stopped. I was now in permanent acute withdrawal, but I wasn't, those rebound anxiety, those rebound symptoms were not present. I was free of those. So, it was better. It was actually better. And at that time, I was using Benadryl because of the histamine thing, and also because of the calming nature of a first-generation antihistamine, and Lunesta at night. And Lunesta. And the thought process between the two is, the Lunesta was the only way I was getting, I was being put out of my misery each night by taking Lunesta, and I would sleep for till, you know, 3:00, 4:00 AM, and I would wake up, and I would go through this whole cycle all over again. And I knew that Lunesta was every bit as bad as, you know, a non-benzo was every bit as bad as a benzo, as far as I've read. The withdrawal could be pretty substantial. So, I didn't want to stay on it very long. But I thought of it as, this is my tapering. I wasn't able to taper the Valium. So, I was responding to the Lunesta. It was working as it was supposed to work. It was working as a sleep med. So, I was able to reset each night by getting a few hours of sleep from Lunesta. During the summer of 2020, things were so bad, however, my motor skills were gone. I couldn't, I was uncoordinated. I was having trouble chewing. I would often bite my tongue. I would get ulcers all over my mouth. And I know I would bite too hard. I would clench my teeth together. And I did so one time hard enough that my jawbone chipped. So, the pressure was hard enough that a piece of my jaw fractured and punctured my gum, and it created an abscess that got infected. And so, what happened was, I had to go to a dentist. But this was an experience going to the dentist in this kind of condition. It was the most terrifying thing I've ever been. I don't understand the fear, but this fear mechanism. I'm not scared of the dentist or anything, really. But when you're in this state, the height and the heightened amount of fear that you have is indescribable. It's unbelievable. So, I went to the dentist, and they prescribed me antibiotics. And antibiotics kicked my ass. You know, so they ratcheted the withdrawal profile up probably by 100%. They made it much, much worse.
Do you remember what antibiotic you took?
It was not a fluoroquinolone, which I was so surprised that I knew about fluoroquinolones and I told them, "I do not want one." And it was not, it was an amoxicillin penicillin-based antibiotic. But it still, it still ratcheted me up to a great degree. So, I sort of went backwards. I did have some healing. I had a few months of healing under the belt, and then that occurred, and I went all the way back to the start line. So, things were not going real well at all. By August 2020, I was, my condition was deteriorating to the point where I just could not function. I could not do anything. Could not drive. I was in constant pain, constant misery. So, my psychiatric team, a new team of doctors that I had been working with, had suggested, "The only way to get better is to restart the benzo and to properly taper over two, three years." And I thought about this for a few days, and then decided, you know, I have to do that. And that was the third fatal decision. That was the third fatal decision.
So, what, what happened when you, I'm assuming you go back on Valium, right?
Well, I tried. I tried Valium. So, that would have been ideal if Valium worked. I would have been able to taper. But Valium, for whatever reason, and I noticed this also in the rehabilitation center, they tried me on Librium, and it seems that the longer half-life benzo caused more of that histamine problem than the short half-life benzos. I don't know why, but that was my experience. So, the paradoxical reaction, whether it was from histamine or from the benzo itself, I'll never know, was more present with the long duration benzos than the short duration. So, I tried the Valium, I started getting all those reactions again. And then I went back to that oxazepam. And it's two days after I started, I realized it was a big mistake. All of my, any progress that I made with my gut health went completely out the door. All food was going through me. Even milk. I would drink milk, and I would get all kinds of anxiety and vibrations. And it was torture. So, I had been at the point where I could, I was reintroducing some foods that I couldn't eat six months prior. So, I was actually making some progress. And then when I reintroduced the benzo, that all went away. All the progress I made went away. So, I quickly decided to stop. Four days in, I decided to stop, thinking that would not be a big deal at all. It was only four days. And that was, that was a fatal decision, man. That was, I experienced what I now know is kindling. And coming off of the benzo the second time was probably a thousand times worse than the first time. It was, it was a pain to a level I can't explain. Everything was magnified by a thousand times.
What did a day in your life look like coming off when you were coming off that benzo the second time?
It didn't last very long. I was only like that for about a week until I tried to take my life because the pain. You know, and when I say I tried to take my life, this was not because I was depressed or anxious. This was because I was in a state like there was a cattle prod attached to me 24 hours a day, all day, all night for the last six months. Or being strapped into the electric chair, but you don't die. This was unbearable. So, I took a bottle of Lunesta and phenobarbital and decided I needed to sleep. I needed to get out of the misery. I needed to end it. I'm never going to be well again. I just was convinced of that. I was beginning to, I don't think I was in a psychosis, but we were in the Northeast. We went through a hurricane pass through in August that took out the power for about a week in August. It was super hot. The house was about 85 degrees. The toilets didn't work. The shower didn't work. We were sweating. The world was locked down. COVID was happening. It was like it was an Armageddon scenario. And I was starting to think, you know what, maybe the world is coming to an end. Like, that's kind of where my mind started going. So, it wasn't like it wasn't a psychosis, but I was extremely paranoid that this might be the end of the world with this stupid COVID and the way that this hurricane and this. And so, I ended up taking overdosing on these pills, and I woke up in the ICU a few days later.
What was it like going through that with your family? I mean, obviously, a suicide attempt is, I don't know, I mean, was it expected? Did they expect it at the time? Did they not? Sometimes that, you know, it is, and sometimes it isn't. How, how did you and your, how did your family react to the suicide attempt?
My family was really, really supportive. You know, I woke up in the hospital. I was delirious. I was hallucinating. I was a mess. And my family was there. My father lives in Florida, he flew up. My two brothers were in Pennsylvania. I was living in New Jersey at the time, so they came. My wife was there every day. It was, it was, I mean, it went as well as possible considering what I had done. But it was still misunderstood. You know, it wasn't, I don't think they understood why I did that and how the amount of pain that I was in that caused that, and the amount of pain that I was still in when I woke up. You know, it didn't really change anything. Made it worse, probably.
Can you talk to us about what it's like suffering in the way that you did and not having, and the people that you love and who know you well, simply being unable to understand, I guess, the depth of what you're going through? What's that like?
It's just extremely frustrating. And at that time, was also, COVID was still alive and well. And I was trying to speak to every family member by phone, and I couldn't talk. I couldn't talk. Talking, I don't know how to explain it, but thinking of the words to say was such a task. And not a task as in like I'm tired and I'm lethargic. No, I was like this. I was so amped up, and my eyes were wide, and I was unable to sit still, and I was in so much pain. And I could not talk about how my day went because my days were, it was just get through the next minute, get through the next minute, get through the next minute. That's what it was.
Did you feel like the doctors in the hospital understood why this had happened?
No. No, not at all. No. The best thing that happened in the hospital was I landed on Depakote. They put me on Depakote. And although I was refusing to, I didn't want any other medicine. I had read in my experience with this process, less is more. Anything that I add has made the scenario worse, even supplements, any vitamins, any supplements, certainly foods that have histamine, which included very healthy foods like spinach and stuff. You would think to eat healthy would equal quicker healing. And so, I tried doing that, just to be kicked in the face after I did so. So, it was a nightmare trying to navigate that time and communicate how bad I was feeling, and that I was not tired, I was not lazy. I was in absolute despair. I was desperate. My brain was ricocheting. It was just constant.
What was it, and what was it about Depakote that was beneficial?
So, I didn't know at the time. I didn't know anything about Depakote, but it's for seizures. And I guess through a different mechanism of action, it increases GABA in the brain. And that's what the psychiatrist on hand at the hospital surmised, and that's why he put me on it. And I was able to, very uncomfortably, but I was able to sit still a little more in the hospital than I was when I was at home prior to that. Now, when I was at home prior to that, the akathisia was so bad that I begged my wife three times a day, two to three times a day, to put me in the front seat of the car and drive me around aimlessly. So, that's what. So, the sensation of the motion of the car quelled some of the movement disorder, the akathisia. So, sometimes it made it worse. Sometimes the seeing the input through the windshield was too much. But feeling the motion of the car was, I guess it's sort of synonymous to being rocked in a cradle. It helped. But the Depakote, once the Depakote was added, I didn't need that as much. It helped with the akathisia. And they also added a medicine called Centrazine, which helped. That helped a lot.
Okay. Yeah. So, when did things start to turn for the better for you?
I'd say about three months after I started Depakote. Now, I started having problems with Depakote because they gave me the extended, I'm sorry, the immediate release format. So, it was a three times a day medicine. And once I got home from the hospital, I would dose it, and I would have the same problem I was having with the Valium, which brings me back to this is causing histamine bursts whenever I ingest something. A lot of these psychiatric medicines interfere with that diamine oxidase enzyme. So, every time I took a Depakote tablet, I would get that severe agitation for about an hour, and then it would calm me. So, I researched if there was an extended release format, and there is. And I found it, and we switched to that. And I take, once I got up to about 1,500 milligrams, 1500 milligrams a day, I started to feel like I could somewhat function again. Not normally, but I was not in complete distress 24 hours a day. I was okay for a few hours each day. But I was, I was terrified that, you know, this is a medicine now that I am also dependent on. So, I need to keep that in check. But there's nothing that's worth avoiding a medicine for this. I don't want to. If you're about to kill yourself, then taking a little bit of medicine is okay to prevent that. And so, that's where I was at. And I still to this day, I'm down to a thousand milligrams of Depakote at night. So, I am tapering. And I spoke to Nicole, one of your benzo coaches, a couple weeks back, and she's come up with a titration schedule for the Depakote. And I will probably continue reducing that starting the beginning of the year. But I started feeling, I think the Depakote was what, you know, helped me stabilize a little bit. You know, I still couldn't do everything. I couldn't look at screens. I couldn't exercise. Any type of stimulation, whether it was physical or watching TV, or, I'm very, very screen sensitive. And I'm surprised that it hasn't happened so far, but, but yeah, it's very hard for me to look at an iPad or a computer or a TV for very long at all. It's like staring into the sun.
Can you give me, so what was the date that you left the rehab the first time?
I guess the, the longer one, maybe the second, the longer one. Yeah. So, I left that, I left that place in April, at the end of April. And then I stopped the benzo May 8th. So, I spent like two weeks.
And what year was that?
2020.
2020. Okay. Okay. So, so you, so I'm going to say that's really when the, I mean, you were having tolerance withdrawal, and it sounds like you were already developing neurological injury before you got there. But that's when it really, oh yeah, that's when it really began. And you came off. So, April 2020. So, now a little over three years later, how much have you recovered since that time, if you were to kind of estimate?
I mean, it's tough to tell because I have medicine on board.
Know, so if I was completely drug-free, I would say that I've recovered 60%. 50 to 60%. I, I, it's tough. I don't sleep. I don't sleep well at all. I go, I wake up several times a night. I, I get two hours of sleep at a time and I wake up. And then, you know, after a few days, then I'll, then I'll sleep. My body will wear down, um, and I'll, and I'll fall asleep. But sleeping is really tough. Screens are very tough. I lost the function of my hands, ironically. I don't know why, um, this happened, but I don't know if it's 100% because of the benzo. But, but there were times where I was getting this sensation like a bolt of lightning was going through my body and up and down my, my arm and my fists and down my legs. And, um, I, I, I woke up a couple years ago, about two, a year and a half ago, two years ago. I, I was waking up and I could not close my hands and I didn't know why. And I was, you know, on the pursuit of looking for reasons why. Do I have arthritis? And this and that. And it turns out that I have nerve damage in, in both elbows, in the ulnar nerve, and also the carpal tunnel. And it's believed to be because I was like this in a fetal position for the majority of two years, you know. So, so I had to have surgery in my elbows and my, my wrists this past year.
Do you think you'll ever be able to work again?
I, I have to. I hope so. Yeah, yeah, I do. I do. Um, I just don't know in what capacity. And, and I, I, I don't know, you know, what kind of employer is going to hire a guy that needs to stay home every fourth day because of symptomology or has to leave early because his head is vibrating? And I have a, a huge, huge problem with internal vibrations. Um, I, I still have that, uh, very, very badly. Internal tremors, internal vibrations, extreme screen sensitivity, um, extreme tinnitus, extreme insomnia, and extreme tension. Those are my, my main, uh, my main things. But if anybody has the, the dysesthesia is what put me over the edge. That is a condition that's unbearable. And, um, if you're in that, you know, condition, I would suggest maybe trying Depakote. And Klonopin. Klonopin helped with the parkinsonian type movements.
What's it like when your life changes so rapidly in the course of, you know, four to five years that you go from being, what, doing well in your career, great job, to essentially, you bowl for two years? What's that like?
It's terrible. It, it's, it's, it's degrading. It's embarrassing. I often feel I did something wrong. Um, uh, I feel that that I hold some responsibility in this for whatever reason. Like, I, I take a Statin at night and it says, "Take one pill every night as directed." That's what I did with Valium. I took one pill up to four times a day. I did it every day for 20 years and I didn't understand that this was a possible outcome. It's terrible what has happened to me. I've lost my livelihood. Now, thank God, I was in a position that I am able to self-fund this. And by, I did have to sell my home. I sold my home in New Jersey and I moved to Pennsylvania. I fought for disability and I won. But I don't think that's the outcome for most people in this, in this case. It's very hard to win those cases. But anybody, you know, everybody that's in this position should hire an attorney and ask them to start the process. I couldn't, I couldn't even fill out the application. I didn't even know how to get on the web or couldn't look at a computer. I, I hired an attorney. I told her the information on the phone. She completed the application. She submitted it.
How much money do you think you've had to spend on your treatment and I guess figuring out what this was, if you were to estimate?
Well, I mean, I know what I'm spending a year. I'm spending about a, between $100, $120,000 a year to support myself and my wife, um, for the last four or five years. I, I stopped working August of '19. So, um, I'm, you know, I'm in for half a million dollars, I guess. Wow. And that's not the, that's not the opportunity cost either. The opportunity cost is a lot higher. Yeah.
And so how is your perspective on, I guess, mental health treatment of anxiety, um, in the US? How has it changed as a result of what happened to you?
It's eye-opening. It's eye-opening. Yeah. I, I thought, I thought all these meds were relatively safe. And now I'm hearing even the SSRIs, people are having a terrible time with SSRIs and SNRIs. Um, so if you don't need it, don't take it. You know, if you don't absolutely have to have it. And I do believe that there is a place to, to, to use these medicines. Um, but if I were writing a benzo prescription today, it would be a two-week script. It would be in bold print that says, you know, "As needed only," like, not, not daily, only as needed. And, and I, I believe that there should be some sort of program instituted that says, upon, upon coming off of these medicines, you must enter a tapering program to prevent any neurological damage that can occur. Because this is, I don't know if I'm going to get better. I really don't. You know, I think I will, based on the stories I've heard. I'm optimistic about it, but I'm not certain, you know.
Yeah, yeah, I would just echo that, you know, having done this for four years, working with a lot of people just like yourself, that that is the trend, you know. And even the people where it's lasting, you know, five, six, seven years, they're still getting better. Um, and so, um, it's not a progressive condition. It's definitely one that continues to recover over time. And so I would say I'm right there with you in terms of the expectations for recovery. I, you know, should definitely be there. That is, that is the norm of what happens with this. Yeah. Yeah. Yeah. That's, I mean, I, I do believe I'm kind of on the far end of the injury spectrum. Um, so it's going to take me maybe a little longer than, than the next guy. Um, and thank God the disability is in place right now. Um, but they do have the right to review my case every three years. I don't know how often they do that, but, um, if they do, and then I have to re-up my claim. And it was hard. It wasn't easy, um, to, to you, you know, convince a judge that something was wrong with me on a level that precluded me from working.
I'd like to invite, you know, I'm, I'm, I'm about through my questions now. And so I want to ask you, Peter, what, what's something that we haven't covered which you'd really like to share with the audience that watches this channel?
Don't, don't give up hope. I, I was, you know, on the extreme end of things. And I think that we all will heal. And if you need, I, I got very regimented in my, um, withdrawal process. I, I, I was very, very strict with myself, saying, "I cannot take anything. I must, I must go by the book and by what I have read on the internet," which says, "Don't take anything because it's going to make you worse." And by doing so, I got myself into a position where I almost, um, took my life. Now, I don't mean restart your benzo, because that caused a kindling problem. And that is, you need to avoid that. But, um, but if there is another medicine out there, um, that you can lean on, certainly do so before there, there is a, there is a solution before you try to, um, take your own life. I mean, that's the ultimate solution, and it's no good for anybody.
Yeah, I've had a lot of patients, um, uh, that I've ended up, uh, placing on fentanyl, you know, due to pain and things like that for that exact same reason. You know, no one wants to take an opiate, let alone a strong one like that. But if the choice is between taking your life and doing something, then I think you, you take risks, and it's a reasonable risk given what's at stake.
I want to, I'm sorry, I didn't, I didn't mention. I didn't mention that I, too, was, I didn't take fentanyl. But at the time where I had to put my house for sale, I could not do that. I couldn't get through that process. I couldn't read the documents, couldn't get my house in order to prep it for sale. Um, my physician had sent me a script a year prior for a buprenorphine, which scared me to death. I sat on it. I didn't feel it. Um, and then, um, right upon the time I, I needed to sell the house, I, I revisited it. And this is the boxone for anybody, uh, listening that understands that's what opiate patients take to stave off their withdrawal. A light script, a 2-milligram script was what I took. Um, and it, it got me through this portion, uh, of withdrawal that was so, so, so tough. Um, and I am now off of that. Um, you can take a shot, a Sublocade shot, which micro-doses you off of the Suboxone, uh, which arguably there's no withdrawal.
So, um, this, Peter, this, this house that you, that you sold, um, when you moved, how long had you lived in that house?
Full, uh, uh, 12, 12, 13 years, something like that. Yeah. All right.
Um, so one thing I want to say, 'cause we, we talked about kindling. Um, and sometimes people, they may be off their medication for, you know, six weeks, something like that, and they'll go, they're still in really bad withdrawal. And they've just learned about protracted benzodiazepine withdrawal injury. And they'll say, you know, "How quickly should I restart?" Right? And so we want to balance the, that you restart against the risk of kindling, which, as, as Peter described, it's a, it's a neurological sensitization that you get after you kind of go off the drug and have an injury. Where two things can happen. One, when you reintroduce the drug, you're more likely to have a paradoxical reaction that can. And so whereas a drug used to be calming to you, potentially, it now actually makes you feel worse. You know, your receptors and your brain is responding to the drug in a, in a, in a different way. Um, and, and that has happened because of the previous withdrawal. And then also, when you come off of it, the withdrawal is harder. And so what you'll, what we often advise people to do is, if you're reintroducing the drug, you don't go straight back to the same dose. You bring it in in a very gradual fashion because you want to mitigate against the risk of having a really abrupt, um, kindling reaction. And so less than four, if you've been off the drug for less than two weeks, you can go back to the full dose. If it's been about four weeks, we usually say start at, at, um, at 25%, then go up to 50 after a couple weeks. If you've been off longer than that, you may want to start at 10% of your previous dose, see how you feel there before going higher and kind of making getting it up every, um, three days or so. So you do it in a much more gradual way. And that's really important if you have a, if you're having symptoms of protracted withdrawal. So yeah, just be, be aware of that if you're doing that with your doctor. Yeah.
The kindling is what, what really got me. Um, it was pain. That, that I, I was just waiting to seize. It was my head was vibrating. The sensation was, I, I couldn't believe that that sensation was caused, and there was nothing, there was nothing attached to my body causing it. But, but it was just this, I was just waiting to seize and to pass out. And, and I didn't. Um, so that was very, very bad. Avoid kindling at all costs. Um, and just recently, last week, that's all recent. This is, I, I, I had an infection in my thumb. I cut my nail and something happened and it got infected and I needed antibiotics again. And so I knew that they can be toxic for people that are in benzodiazepine withdrawal. But I tried it since I was, you know, I'm almost four years in, so I tried it. And I really, you know, you sort of don't have a choice when things are infected. And, um, I couldn't tolerate it. For so, about a day and a half, I lasted on the antibiotic. And the decision to take an X-Acto knife and cut the nail, the thumb open, was more palatable than taking antibiotics. Um, and, and it was just, I was in terrible, terrible, terrible distress. So I worry about that now because, you know, what happens if I have a severe bacterial infection that I must take antibiotics for? Um, it's, it's unbearable. Um, so I don't know what I would do in that situation. Yeah.
Okay, so, uh, Peter, I want to thank you for coming on and sharing your story. I really appreciate, um, being able to learn from you and, um, and yeah, really just explore deeply what it's like to go through this. And I think you gave a just a remarkable and very clear, um, account of, of what this is like. So thank you so much.
Oh, thank you so much for your time. And thanks a lot for what you're doing and bringing light to, um, this terrible, terrible topic.